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Gluten-free? That all depends

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When the Food and Drug Administration in early August of this year finally released its latest regulation regarding food labeling, Sue Eliot, for one, was thrilled.

And why would Eliot, along with a few million others, be excited about food labeling? Because the new ruling provides uniform standards for labels that will make shopping easier for those on gluten-restricted diets, specifically, those who have celiac disease. Eliot is one of about 3 million Americans who have the autoimmune digestive condition that can be effectively managed only by eating a gluten-free diet.

“Adherence to a gluten-free diet is the key to treating celiac disease, which can be very disruptive to everyday life,” FDA Commissioner Margaret A. Hamburg, M.D., said. “The FDA’s new gluten-free definition will help people with this condition make food choices with confidence and allow them to better manage their health.”

Exciting news, indeed, for Eliot, who was diagnosed with celiac disease nearly 43 years ago and has since championed awareness of the condition. She helped start The Gluten Intolerance Group and has traveled the world, spreading information regarding celiac disease and its connection to gluten intolerance.

There are many foods already labeled as gluten-free and they may be able to meet the new federal definition. Before the new guidelines, food manufacturers could include traces of gluten at their discretion. Under the new FDA ruling, products labeled gluten-free will have to contain less than 20 parts per million of gluten. The news comes as a relief to parents whose children are diagnosed with celiac disease or those who have other gluten intolerances.

The process has been slow. Fifteen years ago, Eliot met with FDA officials regarding labeling and has petitioned for changes in Washington, D.C., on several occasions.

“This has been a long-awaited announcement that will make life so much easier for those on gluten-free diets,” Eliot said.

 

Food: It’s what’s for dinner

Every living being needs nourishment to live. That’s a given. But it turns out not everyone can eat everything. Case in point: About 0.6 percent of the population has a peanut allergy, one that can be lethal. Recent news stories include a 19-year-old college freshman who ate a half a cookie that had peanut oil in it and subsequently died, and a 13-year-old Utah boy who, although aware of his peanut allergy, inadvertently popped a peanut-butter pretzel into his mouth and died two days later.

Other common food allergies include milk, wheat, shellfish, eggs and fish. Depending on the severity of the allergy, eating even a small amount of the offending food can be life-threatening.

However, a bad reaction to a particular food doesn’t necessarily mean someone is allergic. It could be an intolerance, which is unpleasant, but not life-threatening.

Now it seems as though everyone is talking about gluten sensitivities. From newspaper headlines to magazine cover stories to the “Dr. Oz Show,” going gluten-free is the topic du jour.

Just 10 years ago, barely anyone knew what the word gluten meant, let alone given any thought to avoiding it. But now, gluten-free diets are all the rage, with high-profile stars being linked to the gluten-free lifestyle.

To people with the chronic digestive order celiac disease, gluten is truly evil. Their bodies regard even a tiny crumb of it as a malicious invader that in turn causes an immune response, according to Dr. Alessio Fasano, medical director of the University of Maryland Center for Celiac Research in Baltimore.

But what about those who don’t have problems eating gluten, yet have jumped on the gluten-free bandwagon, seeking a healthier diet or way to lose weight? It’s not always the best idea, contends registered dietitian Shelley Case, author of “Gluten-Free Diet: A Comprehensive Resource Guide.”
“People who avoid gluten must be aware that they do not get enough fiber and nutrients from their diet,” Case warned. “Many gluten-free products are made with refined white rice flour and starches, which are not only low in fiber but low in iron and B vitamins.”

It’s true people drop pounds when they go gluten-free, but it’s not necessarily because gluten has been eliminated. What happens, Case said, is that when people follow a gluten-free diet, they tend to eat better overall, avoiding breads, pasta, cakes and cookies, eating more fruits and vegetables.

Who should go gluten-free? If you have celiac disease or gluten sensitivity, the answer is yes, you have to. But if not, giving up gluten can be a “giant pain in the butt,” Case said. “It’s much easier to stick to a healthy diet, focusing on fruits, vegetables, lean protein.”
Gluten: What is it exactly?

Gluten is a composite of starch and proteins found in certain grassy grains, such as wheat, barley and rye. Almost all grains have gluten; corn gluten, for example, works well as a fertilizer and weed suppressor, while glutinous rice is in many Asian foods. However, those grains — and the gluten in them ­­– are perfectly safe for people with celiac disease and gluten intolerance.

It’s the gluten that occurs in a specific sub-group of grains, including wheat, barley, oats and rye, that cause specific reactions in those that are gluten-sensitive.

Most of us love gluten because it’s what gives our favorite foods that special touch: it makes pizza dough stretchy, gives bread its texture and is used to thicken sauces and soups.

Some researchers say the grains we are eating today have changed dramatically, causing what seems like an explosion of gluten-related health problems.
 
“In our great-grandparents’ era, wheat contained very low amounts of gluten and it was harvested once a year,” explained Fasano. “Now we’ve engineered our grains to increase yields and contain more characteristics, like more elasticity. The consequence is extremely rich, gluten-containing grains.”

With wheat being the third largest crop in the U.S., behind corn and soybeans, no wonder gluten is so difficult to avoid. Nonetheless, a gluten-free diet is critical for people with celiac disease, because eating gluten causes the body’s immune system to attack and damage the lining of the small intestine. As a result, the body is unable to absorb nutrients necessary for health and growth. And since all derivatives of wheat, barley, rye and oats must be avoided, cross-contamination with gluten from these other grains makes learning to cope with a gluten-free diet a bit difficult.

At first, that is.

“Life does become a bit more complicated, but the trade-off (a gluten-free diet) is worth it,” said Cathy Van Ruhan, who was diagnosed with celiac disease seven years ago.

Van Ruhan moved to Sequim 22 years ago and worked for the Sequim Gazette for 18 years. Recently retired, she said eating a gluten-free diet means her anemia and osteoporosis have abated and she feels healthy.

“Once you are able to absorb nutrients, all the symptoms go away,” she said. And now that grocery store shelves are filled with gluten-free products, buying food is easier. “Going out to dinner or potlucks is difficult,” she admits.

Celiac disease: Not a death sentence

Eliot agrees a diagnosis of celiac disease is not the end of the world.

“Frankly, it was a relief when I found out what I had and there was a ‘cure,’” she related.

Born and raised in Oneonta, N.Y., Eliot attended college in Ithaca, N.Y. After graduation, she moved to Minneapolis, Minn., where she began working as a flight attendant with then Western Airlines, later bought by Delta Airlines. She was based in Los Angeles and San Francisco, but in 1971, was transferred to Seattle. It turned out to be a fortunate move.

“I started getting sick when I was in San Francisco,” she said. “I got a bad diagnosis there and when I got to Seattle, I ended up at the University of Washington Medical Center.”

Twenty-seven years old and weighing only 85 pounds, she spent two months in the hospital while her doctors struggled to make a diagnosis. Her dietician finally put two and two together, concluding gluten was the culprit and celiac disease was the answer.

Celiac disease wasn’t recognized until 1952 and that was in Birmingham, England. It was several years later that Fasano, a world-renown expert on celiac disease, brought it into focus in the U.S.

“Early on, doctors thought it was a babies’ disease, that they would outgrow it,” Eliot explained.

Actually, Eliot most likely has had celiac disease all her life, as there is a genetic disposition for the disease. Her father had type 1 diabetes, and likely celiac disease, as well.

“We ate gluten-free when I was growing up, so I had no symptoms.”

That, of course, all changed when Eliot was on her own and flying around the country, eating all sorts of good — yet bad for her — food.

Once diagnosed, Eliot took to the streets, literally, wanting to inform and help those with celiac disease and sensitivity to gluten. She and her dietician became close friends and began traveling the world educating people about celiac disease.

Six and a half years ago, Eliot and Blaine, her husband of 30 years, retired to Sequim, where she continues to be a crusader, making sure those who have or wonder if they have celiac disease have the support and knowledge they need to live an enjoyable, uncomplicated life.

Also known as “Sunny Sue,” Eliot volunteers at radio station KSQM FM 91.5. If you want to know what Sunny Sue is up to, tune in from 5-8 p.m. on Saturday or Sunday to listen to her show.

Celiac disease or gluten sensitivity?


Celiac disease affects people in all parts of the world. Originally thought to be a rare childhood symptom, there are more than 2 million people in the U.S. that have the disease, or about 1 in 133 people, according to the Archives of Internal Medicine, 2003. In fact, Eliot was the first midlife adult to be diagnosed in 1971 with celiac disease at the University of Washington.

Because celiac disease can be confused with several disorders, it has long been under-diagnosed or misdiagnosed.

Gluten sensitivity, on the other hand, can lead to similar celiac symptoms such as stomach cramps, diarrhea and bloating. But unlike celiac disease, gluten sensitivity or intolerance, if you will, doesn’t damage the intestine. It can be uncomfortable, but not life-threatening. For years, health professionals didn’t believe non-celiac gluten sensitivity existed, but experts are now acknowledging that it may affect as many as 20 million Americans.

“Gluten sensitivity affects six to seven times more people than celiac disease, so the impact is tremendous,” Fasano said. “For the first time we can advise those people who test negative for celiac disease but insist they’re having a bad reaction to gluten that there may be something there, that they’re not making it up, that they’re not hypochondriacs.”

People with celiac disease have higher than normal levels of certain autoantibodies — proteins that react against the body’s own cells or tissues — in their blood. To diagnose celiac disease, a patient’s blood is tested for high levels of anti-tissue transglutaminase antibodies or anti-endomysium antibodies. However, doctors warn, before being tested it’s important to continue to eat a diet that includes foods with gluten, otherwise the results may be negative even if the disease is present.

If there was ever a good time to have celiac disease or be gluten sensitive, now would be that time. Thanks to the health hype and the corresponding interest in gluten-free diets, as well as the uptick in foods marketed to those with celiac disease, living without gluten is doable.

Now, with the FDA’s new standards for labeling, consumers can feel more confident in their gluten-free choices. And that, indeed, is exciting news.

For more information regarding celiac disease or gluten intolerance, visit www.gluten.net or call Sue Eliot, co-founder of The Gluten Intolerance Group, 360-477-4548.

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